Worrying is normal for the person living alongside a person with dementia, and as a family care partner or support person for a few people who have died from dementia I understand too well how difficult it is not to worry. When you love someone, and they are sick or troubled, not only do you want to support and help them, you worry about them. All very normal.
What happens too often though, in the carer role of the person with dementia – paid service provider or a family/friend support person – is that the their worry can become the catalyst for taking away our life and our rights.
It is an important statement to make, and the catalyst for this blog. Too often in the caring role, paid and unpaid, we do things in the ‘persons best interests’, or to remove the danger of litigation if providing paid care. This is all too often at the risk of the human rights of people with dementia.
My husband and BUB said recently;
Worrying is part of the territory… But don’t take your worry away, by taking their life away.
(Peter Watt, 2015)
Locking people up who have mental illness is against the law, and cannot happen with out all sorts of legal sanctions needing to be met. Yet, we have, for many years, been locking people with dementia away ‘for their own good’. Even people in residential low care, with no risk of ‘escaping’ or ‘wandering’, are locked in for their own safety. And prior to going into residential aged care, they are told ‘this is your new home’. But a new home, and no front door key, the fine print that is actually missing in the marketing material.
People with dementia want to take risks, in the same way everyone else does, and until the later stages of dementia, when it really could be too risky, it is important to balance the worrying against the rights and life of the person we are worrying about.